Barriers to Pediatric Palliative Care

The medical, psychosocial, cultural, and financial barriers to the ideal delivery of comprehensive pe-diatric palliative care are many (Frager 1996; Liben 1996). Professionals and parents are often unable or unwilling to make the transition from curative to palliative care when the two are seen as mutually exclusive. In such models, palliative care is equated with "giving up." However, palliative care medicine does not preclude the appropriate application of life-sustaining therapies. In fact, these seemingly disparate approaches may in fact be offered concurrently, although one may predominate over the other at different points in time.

Misconceptions around medication pose a barrier to optimal palliative care. Often, children require far larger dosages of medication than those recommended in standard drug models (Sourkes et al.

2005). Misapprehensions about drug addiction and respiratory depression on the part of both professionals and parents lead to the imposition of artificial and unnecessary limits in the therapeutic plan.

At the hospital level, staffing issues often serve as barriers to optimal palliative care. Frequent changes in the treatment team may contribute to miscom-munication and confusion about the child's treatment plan. Physicians typically rotate off-service on a weekly or biweekly basis, and primary nursing care is often not available. As a result, established treatment plans may not be sufficiently clarified or may not be implemented by subsequent providers who may disagree with previous decisions. Frequent staff rotation also increases the likelihood that treatment team members may possess varying levels of experience with palliative care (Liben et al. 2008).

Community barriers include the lack of hospice and other health care professionals familiar with pe-diatric symptom management. Often, children and their families become intensely dependent on their tertiary care center and do not rely on community resources, including their primary care clinician. As a result, such professionals miss opportunities to gain expertise in pediatric palliative care.

Reimbursement issues are another major hindrance in developing comprehensive palliative care services (Harris 2004). In most cases, third-party payers consider palliative care and curative or life-prolonging care as mutually exclusive. Thus, palliative services are not reimbursed if children continue

Table 16-1. Categories of life-limiting illness in childhood

1. Life-threatening conditions for which curative treatment may be feasible but can fail. Access to palliative care services may be necessary during periods of diagnostic uncertainty and when treatment fails. Children in long-term remission or following successful curative treatment are not included. (Examples: cancer, irreversible organ failures of heart, liver, kidney)

2. Conditions for which premature death is inevitable. Long periods of intensive treatment may be aimed at prolonging life and allowing participation in normal activities. (Examples: cystic fibrosis, HIV/AIDS)

3. Progressive conditions without curative treatment options. Treatment is exclusively palliative and may commonly extend over many years. (Examples: Batten disease, mucopolysaccharidosis, muscular dystrophy)

4. Irreversible but nonprogressive conditions causing severe disability leading to susceptibility to health complications and likelihood of premature death. (Examples: severe cerebral palsy, multiple disabilities such as following brain or spinal cord insult)

Source. Adapted from Joint Working Party on Palliative Care for Adolescents and Young Adults: Palliative Care for

Young People Aged 13-24. Researched and written by Thornes R. Edited by Elston S. Bristol, UK, Association for Children with Life-Threatening or Terminal Conditions and Their Families, September 2001. Used with permission.

to receive treatments that are deemed life prolonging, such as blood transfusions or palliative chemotherapy. In addition, services often exceed the 6-month limit of the traditional hospice benefit. At present, advocacy efforts at the state and federal levels (e.g., Children's Hospice International, California Children's Hospice and Palliative Care Coalition) are working to ensure that children have access to an individually tailored care plan unlimited by the current restrictions.

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